The check engine light came on in my Expedition recently. It was no surprise, it had just passed 200,000 miles. This car has been a work horse for many years. Hauling 5 kids around, never breaking down, I’ve been super thankful for it. But it, along with many things in my life has the look of neglect. After battling chronic illnesses for over a decade, our furniture, our cars, our clothing and our bodies have the look of being deeply worn and deferred maintenance. Everything needs to be replaced, we have been making it work for a long time because we were in survival mode. But you can only do that for so long. When that check engine light came on, I ignored it for several weeks. Knowing it was going to cost me money I didn’t possess.
A few weeks into ignoring the check engine light, the brake light suddenly came on and wouldn’t turn off. I wasn’t surprised at that either. Our mechanic had told us when we replaced the tires that it would need to be done. With lights flashing at me, I continued to drive. I had to. It is the only vehicle we have that holds our whole family. We need it to keep going. My car is a reflection of my life. A life tattered and torn by illness and lack. When you are so fatigued you can’t hold up your own body, you don’t have energy to clean the car. I wasn’t always like this. I used to take care of things. And after being in remission for a couple of years I can do a lot, especially in comparison to being in bed all day. But these lights reminded me of my years with chronic illness. How do you shut off one light, without the resources to repair it? I felt much that way while being sick. My kidneys were screaming at me, and eventually, they became a light that I could not shut off. My bones ached unceasingly. Pain pooled in any part of my body that touched a surface. As my hair began to fall out I would try and mask it with a hat, that too became a light that I could not turn off.
I stand on this side of things thankful to be free of pain. We have begun the lengthy task or repairing and rebuilding our marriage, our finances, and our lives. Our kids who watched through tears as our household fell apart, need to get to know us again. The real us, not the people we were as we struggled to keep our household afloat. Sure we were living in the same house, and I said goodnight to them. But we were separated by a veil of pain and loss that few people could see. The dashboard of our life was covered in flashing red lights, each demanding some attention. Out of necessity, you grow numb to the reminders. Sure, you see them, but ignoring them has become a normal part of your routine. Even more frustrating is when you do actually take the time, energy and resources to try and get some of those lights turned off, and the mechanic says that it is all in your head? What? Or even that your car is perfectly fine and then charges you thousands of dollars as you walk out empty handed?!$#@% The second you get back in your car, you see them, you feel them, they taunt you night and day. And yet solutions cannot be found?
Our bodies are far more complex than cars. If the “mechanics” you are seeing can’t address some of those flashing lights for you, find another who will. It will cost you time, energy and money. And for that, I am truly sorry. Because I know that each and every movement you make, takes with it the strength and stamina you already lack. I wish it was a one-time decision. But it is not. It is a decision you must make over and over again. One of the hard things about all of this is that our paths towards wellness can look very different. Please know that it is NOT your fault. You shouldn’t have to become your own physician. You shouldn’t have to beg for adequate care or sufficient pain management. You shouldn’t have to read, research and strategize. You shouldn’t have to live in agony, and you shouldn’t have to FIGHT this hard, and yet you do.
Time and time again you must choose to not give up. Time and time again, you will have to give what you don’t have. And time and time again, you will weep at the magnitude of losses. There seems to be no easy path with Lyme. And yet people are getting better, not all of them, but there is healing and restoration. Their dashboards look better than it did a year ago. My advice to you as you walk this path is to know that you are not alone. You may be isolated, afraid and broke. But for those of us who have healed, please know that our hearts are with you all. I suffered for years on an unfathomable level. I hope and pray that my journey can minimize your journey in some way. We talk about the emotional, physical, financial and spiritual side of things on the LymeVoice podcast. The cost of treatment may be a big flashing light on your dashboard right now, but take comfort in knowing that you are not alone. You are not crazy, and that within the darkness, there can be light!
Keep Fighting~Sarah Schlichte Sanchez
*Because people often ask I implemented the Gerson protocol and found good care at a clinic. I did both those protocols for 2 years and continue with them both in maintenance mode.